Helena Smith and Alice Barry from Young Epilepsy
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About our guest Helena Smith:
With over 10 years' experience in charity and youth sector, Helena Smith is Head of Youth Development & Support at Young Epilepsy. She manages the support, inclusion and participation services for children and young people with epilepsy across the UK, which advocates for and empowers young people to fulfil their potential and succeed.
About our guest Alice Barry:
Alice is 22 years old and was diagnosed with epilepsy at age 19. SHe has tonic-clonic and focal seizures. Finding out she had epilepsy in adulthood took a lot of adjusting, particularly as she was not able to drive anymore and had to become more aware of things like going places independently. It was difficult to get used to what was going on, and also took a toll on her mental health. However, she has been careful not to let it define her and has now finished her second year at University. She is keen to raise awareness of epilepsy as she has noticed many misconceptions and myths surrounding epilepsy. She also wishes to emphasise how a diagnosis can impact ones' life and mental health but shouldn't limit the person.
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S01E25 Young Epilepsy.mp3 - powered by Happy Scribe
Welcome to the Enabled Disabled Podcast. I'm your host, Gustavo Serafini. I was born with a rare physical disability called Pfft. My journey has been about selfacceptance persistence and adaptation. On the show, we'll explore how people experience disability out the stories we tell ourselves can both enable and disable. Our vulnerability is a foundation for strength and why people with disabilities can contribute more than we imagine. I hope that leaders, companies, clinicians, families and friends will better understand our capacity to contribute to the world and help enable us to improve it.
Young Epilepsy is the only UK charity dedicated to creating better lives for children and young people with Epilepsy and related conditions. In this conversation I spoke with Alice and Helena. Alice is a bright 22 year old studying international relations. She was diagnosed with Epilepsy at 19 because of the support and encouragement she got from young Epilepsy. She decided to become a young rep for them to help other people her own age who have just been diagnosed with Epilepsy and raise awareness for Epilepsy in the community. Elena Smith is head of Youth Development and Support a Young Epilepsy.
She manages the Support, Inclusion and Participation Services for children and young people with Epilepsy across the UK, which advocates for and empowers young people to fulfill their potential and succeed. This talk was new territory for me. Not only did I learn about Epilepsy and some of the challenges it brings, but I got to see the magic of what happens when circumstances and people unite for better outcomes. We learn, adapt, grow and give back. It's not despite of it's because of. If you're a fan of the podcast, I have some good news.
We have a newsletter. The goal of the newsletter is to give you all meaningful updates, share my thoughts about the issues I'm working through and what I want to explore next, please go to www. Enabled disabled. Com to sign up. Thanks, Alice. Elena, welcome to the show. Thank you so much, both of you for being here today.
Alright.
Thank you. Yeah. It's lovely to be here. Such pleasure.
And where are you both zooming in from? I know you're in the UK.
I'm in Essex, which is just outside of London.
Yeah, and I'm in London itself, so I'm in North London at the moment, so zooming in from far away, but it's about 07:00 p.m. Here, so it's not too bad.
Excellent. Okay. So Alice, tell us a little bit about the audience, about yourself. You are a young, bright 22 year old. Tell us a little bit about your your life, you know, your childhood growing up and give us a sense of who you are. What are you interested in? What do you like to do? You know, what do you like to study in school or do you not like school at all?
So I'm 22. I've lived in Essex my whole life and currently I'm at University studying politics and international relations, which I'm actually really enjoying. And I was sort of pretty healthy throughout my childhood had lots of different hobbies. I do Irish dance at Uni and a few different music related things. Yeah. And then. So when I was 19, that was when I had my first seizure. And then from there I was diagnosed with flat.
And when you were, how long did that? What did that diagnosis process look like? Can you tell us a little bit about, you know, what you went through? And then we can talk about how you've adapted to that.
Yeah. So I was on holiday. It was August, and as I said, I was 19. I was away with a friend and I had a seizure. It was a tonicclonic seizure. So I was unconscious and I was sort of shaking. I don't remember any of it. And after that, I stayed in hospital. I came home, saw a GP, and I was told that in anyone's lifetime, sort of okay for someone to have a seizure. It doesn't mean epilepsy. So I carried on. I didn't really think too much about epilepsy.
It was then not until the following January that I then had my second tonic chronic exposure, at which point it does become sort of a discussion of is this epilepsy and various scans. So I then had an EEG scan which diagnosed generalized epilepsy, and the diagnosis was sort of finalized in March. So that was two months after my second seizure. And since then I've been having a few of the chronic chronic seizures, which I said where I'm completely unconscious and also focal seizures, which I'm awake for.
I'm aware of what's happening, but I sort of feel it begins with a really intense feeling of deer, which is really strange. And I then feel sort of pressure in my shoulders and my neck and feel very spaced out and dizzy, and that will either then just stay with that and pass, or that will then progress into a tonicclonic seizure.
And when when it just pauses and it's not the the tonic seizure, the chronic seizure. It just depends on how long for it to go away. So you usually just sit down and just, like, just hang out for as long as you need to in order for that to pass. Is that?
Yeah. The phone call seizures don't tend to last too long. They're sort of maybe about 20 seconds or even less often. And usually, I suppose as you get used to your epilepsy, you sort of become adapt to what is about to happen. You sort of can work out if it's going to stop there or if it's going to progress into something else. So usually I can sort of move myself out of a crowded place or wherever, Brian, and then just either wait for it to pass, in which case I'll usually feel a little bit shaky, but I'll be fine or sometimes, but quite rarely it will then turn into a tonic Sonic seizure, which takes a little bit more dealing with afterwards, usually.
And then I would imagine that with the on a chronic seizure, do you make are your friends and family, of course. But are your friends aware of it? So if you're with somebody they know they know what to do, they understand what you know, what the process is to make sure you're okay.
Yeah. So this is definitely something that has taken a long time to get to grips with. It's been three years now, and I think every time I have a seizure, it sort of teaches me new things that I need to do to prepare in case there is another one. So things like telling people early on when I meet them, that I do have epilepsy, and it's unlikely. But there is a chance that I will have a seizure. And this is what you need to do. You don't need to panic.
You don't need to phone for an ambulance and things like that just to sort of make them aware that. But it is there and it could happen. But then it's not something that they need to worry about too much, and they don't need to phone nine, nine, nine or something like that, because I am okay. But, yeah, all of my friends are out of understanding that it could happen. But it's unlikely to happen. And things that I have had to sort of deal with more is sort of letting teachers and lecturers that my uni be prepared in case it were to happen.
And things like that. I think that's been the main thing in the last couple of years because I go into uni definitely opened a few more issues that I wasn't expecting. I.
Think that I mean, this was only something that started happening to you when you were 19. I was born with my disability, and it's it's a physical, very obvious thing that people see. And I've been speaking recently to people who have what we're calling invisible disabilities. Right. So if somebody were walking past you on the street, they would never know unless you tell them. So there's different, different challenges and different understandings that you have to have than me. I cannot hide my disability. It's there for everybody to see at all times.
Can you talk a little bit about like, I think it's so interesting, especially at your age. This this idea of every time you have a seizure, you're learning more about yourself. I think that you're still I would like to explore that. So I think it's so important to to have that understanding and acceptance and that openness with people to let them know more about you and that it's okay. There's no shame in it. Right. So as there shouldn't be, there's no, there's no lack of your sense of self worth shouldn't diminish because of it.
It's something that it's a part of you and you're learning from it and growing through it, correct?
Yeah. I completely get what you're saying and especially what you are saying about it being an invisible disability. That's something that at the beginning I'd say I fought with because it's there, but you don't know when it's going to strike. And it's not something that people can. People don't meet me and instantly know that I have Epilepsy and I could have a seizure at any time. And yeah, it was definitely something that I had to take a while to get my head around. But yeah, definitely. I'd say it is something that I've learned to live alongside rather than something that sort of controls me.
And that's been a massive, massive help with overcoming that.
Learning and learning more about yourself, right. Learning about how resilient you are and how you can problem solve and how you can adapt and still live the life you want to live. I mean, you talk to me about, you know, you University and your political interests. Like, what are you hoping? Where are you hoping to go with that? Would you like to be an ambassador? Would you like to get involved in politics?
I'm at the moment, I'm just I'm enjoying so many different parts of politics, especially the international relations side of it, things like foreign policy and feminism and all these different sides of it, which I love. So I haven't got a clear path set for me yet, but I'm hoping something really sticks out to me soon. I definitely consider, especially now with my pets, like the way I'm able to do for young Epilepsy. It definitely has made me think more about charities and things like that and actually being able to help people through what I've learned at Uni.
That's something that's become really important to me.
So can you talk a little bit more about that? How did you hear about young Epilepsy? How did you get involved? And what are you, Howard? What's your involvement with it? How is it changed you? How has it helped? You know, what is it done for you so far?
And young Epilepsy has completely changed my life. To be honest, I don't actually know how my epilepsy journey would have progressed if I hadn't found young Epilepsy. And this is mainly because when I was diagnosed, Epilepsy is so common, but I didn't know anyone who had Epilepsy. I'd never met anyone who had Epilepsy. I didn't know anything about Epilepsy, and I was so desperate to find information. I was looking all over the Internet for any sort of information, especially for information of other people who were similar age to me.
And I just couldn't find anything relevant or anything up to date. And it did make me feel isolated, especially having just gone to Uni, having this brand new diagnosis and then really struggling to find the information that I needed on it. And I ended up turning to Instagram and just looking through anything related to epilepsy that I could find. And I just came across young epilepsy, and at the time, the post that I came across was them looking for new young reps to join. So I straight away, went for that email and got in touch with young Epilepsy, which helped so much just being able to make that contact right at the beginning of University.
And from there I was able to meet a load of other people who are a similar age to me or the young reps age between, I think, 16 and 25. So we're all a similar age. We're all either in education or so starting our careers. And it was so useful to meet those other people and to sort of share what we've gone through and the different experiences we've had and then also from from working with young Epilepsy. I've also had so many opportunities as well. I've been able to write a blog post which was about things that I wish I'd known.
When I was diagnosed. I was also able to interview Beth Dobbin, who is a sprinter who's just competed in the Olympics, and I've been able to do some interviews with other charities as well. So yeah, it's really helped with not feeling the isolation that I felt right at the beginning of the diagnosis has helped me to turn all my spheres into something so positive. It's given me all the information I wish I had when I was first diagnosed, and I know that through me learning with the charity, I'm then able to help other young people who really need that information as well.
That's a great answer. Have you I'm imagining that this is so but have the people that you've met, have they become friends? Are they people that you're constantly in touch with? You're still sharing experiences, learning from each other?
Yeah. So we have a group chat and we also we have each other on different social media and things like that. And we are really supportive group, so we can go to each other with issue. And it really useful to just ask, ask the others if any strange things that I've found that I've felt with epilepsy such as headaches or things like that. I've been able to ask if anyone else has any advice or any experience with things like that. So we're always chatting to each other and supporting each other when we're doing different campaigns or things with young Epilepsy.
It sounds like what's missing. At least a big part of what's missing is that there needs to be more awareness about what is epilepsy when it can affect you and what you're supposed to do with it, that there's still just a general lack of information out there, right?
Yeah. There is such a lack, especially on the Internet, with it being so accessible and they're being so much out there. I did notice that there is just such they're so little on such a common condition and especially for young people. It is scary and you don't know what to do. And it really would be so useful for everyone to have that access to the information. I don't know if Hanna on once that add anything.
Yeah. Well, Alice has kind of summed up. Young Epilepsy is mission really to bring young people and their voices front and center into what we do as a charity. So we're leaving UK charity for children and young people with Epilepsy. And we're really we're proud of our group of young reps who really represent the voices and faces of young people across the UK that have Epilepsy. And just as you think of Sarthe, knowledge and understanding of Epilepsy is so minimal across the general population. And I imagine it's the same over where you are, you know, people might say, and I'm sure, Alice, you hear this a lot.
It's one of our young reps big frustrations that people would say, oh, is it flashing lights? Is that the thing that will cause your seizures when actually it's I think about 3% of people with Epilepsy that have challenges with flashing lives, and there's a whole array of other challenges that come with epilepsy. There's nine different types of seizures, 40 different types of epilepsy. It can manifest in so many different ways in young people and adults and have huge differences in the impact on your life for us as a charity as well, we really recognize that the earlier you get diagnosis and effective treatment and support young people, the better they'll be able to manage their epilepsy into adulthood.
So it's actually crucial that we give as much support as we can the earlier, the better, really. And obviously for some people is the condition they're born with. Some of our young reps have had that other people are like Alice, who have fat to completely change their day to day lives because they've had a diagnosis a little bit later in their life. As my role, I head up the use development and support service at Young Epilepsy, and that's where Alice and the young reps come in.
And they are fantastic. They get involved in all the decision making in the organization. But beyond that as well, they're part of influencing policy and government and NHS. And as Alice mentioned, they've got opportunities to get involved with what we do. So we also also offer a digital platform for young people with Epilepsy and for their families to find information, advice and guidance. And that's called the Channel, the Channel to a UK. And our young apps get involved with writing blog posts and doing interviews for that.
And then we also offered direct support for young people and their families, too. So that's open for our young reps, but also for all young people across the UK. And we've got support workers that work directly with young people and their families to support with whatever challenges they may need and adapt to what that looks like. That might be some therapeutic support one on one, or it might be some more light touch group support over a longer period of time. But yeah, it's brilliant to have Alice as part of our group of young reps because they really are vital for us trying to push our our mission of getting better provisions for young people and improving diagnosis and treatment, spreading awareness and understanding across the board as well.
I don't know how the healthcare system works in the UK, but I would think anyways, here here, once you're past 18, you're kind of thrown to the greater medical world and they may know or may not know anything about your condition, but I would think that it's so important, like if the doctor who had diagnosed Alice had also had at his disposal. Hey, look, I'm not leaving you alone in this here's this terrific group that you can go to. They can help you with X, Y and Z, that the health care system would just work so much more effectively that way.
Right?
Absolutely. And Alice, I'm sure can talk about transitions and is unique for Alice and her position, but she'll know what it's like for other young reps. I completely agree. I think what's vital for us as a charity is that we're having a really clear line of communication and encouraging that twoway process between the clinical environment and after the charity and young people and their families. And often it's the young people and the parents that are the real experts in this. They hold all of their knowledge and information.
And what we find, unfortunately, is that often things aren't joined up. A young person with Epilepsy is very likely to also have other conditions. So 50% of people with Epilepsy also have water Tim, about 40% with other special educational needs, and one in four young people have mental health challenges as well. But often what we find is that the epilepsy specialist will be supporting with that. But then there isn't that holistic view of the whole person and what they need. And our young people tell us that they are kind of founded about from Department to Department, and there's big gaps between appointments, which then just makes the whole process much harder to understand exactly what is going on and what support do you need.
And absolutely, we would love for it to be in the kind of process of treatment that young epilepsy is listed and our support services are listed to. And that's kind of a big part of what we're trying to do to get the words out there. But at the moment, it's really not joined up, and it's not super clear and especially for a young person that's going from pediatric care. So when they're a child to the adult care as well, that can be really, really challenging, especially if they've built relationships with certain people.
I don't know if you have anything to add to Alice, from your own experience or from our other young reps as well and their stories.
So.
Because of my diagnosis being 19, I was never I never had that transition period from Pediatrics. I don't care. But but I would say agreeing what he was saying about there being a lack of I don't know how to explain it, but sort of looking at the person all round when being cared for things like mental health as well from an epilepsy diagnosis is not really mentioned by doctors a lot of the time, and that it is so important when you're facing a diagnosis of any kind.
Yeah, absolutely. Do you work with? I have several questions on do you work with if there's somebody outside of the UK who has epilepsy, can they still join? Maybe you can't give them the same kind of health care advice, but even as just a connection point, can they join and interact with the other young reps? Or is that something that you're still just based in the UK?
So definitely our digital platforms to the channel that's obviously open to his worldwide. So we have people from all over the world coming in on to the platform reading our articles. We've also got a great forum platform called The Hub, where young people and any families can make an account on there and start conversations, NS or join conversations and interact with each other. So I definitely would encourage anyone that comes across young Epilepsy, especially the channel, to get involved with those conversations and really support each other because that's also what we want to encourage that peer to peer support that network, that community, because that's what's really powerful.
If Alice can meet somebody that's exactly the same age as her or a little bit further ahead and can get some hands on advice from someone that really has been there that's so so valuable. So while we are a UK based charity and our beneficiaries are, of course, all the children are young people in the UK with At Etsy. Our services can be reached by people across the world, but particularly our digital platform, and we're also looking to build an app as well to support with epilepsy management and seizure seizure tracking and interaction with the healthcare system.
So again, there's lots of exciting things on the horizon that we definitely would be able to offer at least some support and advice giving and information provision to people across the world.
That's terrific. And it's so important. Alice, what do you wish that people knew about you, that that they don't. It's a general question, but like from 19 on from your experiences from a 19 year old to a 22 year old, what is it that you wish people understood about you, who you are today and who you want to be that maybe gets missed or gets lost because they want to focus on maybe that you have epilepsy, like, what are they missing? What part of that? What part of you do you want people to see and appreciate and understand?
I would like people to understand that if they flashlights, I'm not going to have a seizure, because that is often the first thing that I and many other people, as Helena is saying, we'll hear when you first tell someone you have epilepsy. But I suppose something that's been really important to me is that I think in the past three years and it's probably the same for people with any diagnosis. You do learn so much about yourself and grow as a person. And I would definitely say that because of epilepsy, I've become such a stronger person and I'm able to deal with a lot more things.
And a lot of the time when I talk about epilepsy to people, I often mean in a positive way. And I think that's quite difficult for people to understand, because I think there's a lot of stigma around disabilities and illnesses and conditions that that you can't be okay with it. But a lot of the time I do take the good from it, and the things that I've learned from it are often positive, and they help me as a person. I think if people would understand, but it's not all bad.
It really isn't all bad. That's quite important to me. And I think I can do a lot of good with with the things that I've learned about myself.
Have you changed the way you see other people?
I definitely notice. Well, a big thing that I noticed when I sort of compare myself to other people is how much I need to take care of my body compared to other people. And it is something that I noticed now a lot of my friends that I can go out drink alcohol like night after night and things like that, and I can't do that. But I don't see that as a bad thing. So I notice physically about other people, the things that they can do and how lucky they are that they can do whatever they want a lot of the time, they don't need to think about it.
But then at the same time, I don't know if I don't know if I want to be like that. Anyway. In a way, this has been a good wake up call for me to want to and need to take more care of myself.
That's a good answer. But I'll try to ask the question in a different way. Are you seeing people? Let's say if you encounter somebody, somebody else with a disability, maybe it's a visible disability. Maybe the way you approach that person or interact with that person has changed from before, are you? Do you try to understand people differently? Are you thinking about them differently because of your experiences?
I think that the way, as I was saying before, the way that I view disability now because that has changed in how I view myself. And when I think about myself, I don't see epilepsy or disabilities as a negative. I think that made me if I do meet someone with another disability, I think or they're probably not feeling sorry for themselves or feeling negative about their disability. So why should I make them feel like not like third, but I think it's easy as someone who doesn't have a disability to come across that way.
Thank you. That's a good connection. Thank you for closing the loop on that. That's great. It's not. And I agree with you. The way I see my disability is sometimes it's a big part of my life, and I have to make important decisions around that. And other times it's like it's not even there. I'm not even thinking about it, right? It's kind of just another part of me that gets put into the mix. Yeah. And where do you see? Like, how do you envision yourself in three years, five years?
Where would you where do you see the continuation of you know, who you are as a person and how you the place that you want to be in the world? I know that's undefined. I know you're 22, and that's a lot to ask. But when you dream about yourself, where do you kind of hope that you go?
I hope that I can carry on with accepting and understanding epilepsy, because I think the last three years have been such a big change. And there's things that I'm still getting used to now and accepting a diagnosis. Obviously, it takes it takes a long time, so I wouldn't say I'm completely at peace with it at the moment. So I'm hoping that sort of in the next few years I'm able to to continue to understand and accept Epilepsy for what it is. And I also hope that at the moment, I'm nearly, yes, seizure free.
So I'm hoping that that continues if I carry on being disciplined with looking after myself, exercising, drinking enough water, getting enough sleep, taking my pills and things like that. I'm hoping that I can keep that going, which would then hopefully give me more confidence with being able to drive again. And yeah, in the future. I just like to to carry on helping other young people when they're getting their diagnosis, to be able to get the information that they need. That has become really important to me because it was one of the first things I noticed when I was diagnosed.
And I know now that that with young epilepsy, I can help to not let other young people be in the same situation.
Is there somebody that you've met or interviewed or read about that as giving you some extra resiliency, courage, inspiration, somebody that you say you that person is a great example of somebody living positively with Epilepsy and still, you know, not letting it stop them and doing what they want to do.
Yes. So Beth Dobbin, who I mentioned before, she's sprinter who competed a few days ago in the Olympics in Tokyo, and she had a seizure when she was. I think it was twelve. She was and it was so severe that the doctors thought it may have been a stroke and it affected for a while. It affected her speech and her memory. She couldn't recognize her parents, and she was so young to go through such a massive thing that must have been so scary for her. And I spoke to her about how she still lives with the fear that she's going to have a seizure, which is a horrible it is a horrible fear because it does show you that you don't have control over your brain and your body, and it's going to do what it's going to do.
But despite that fear and the impacts that medications had on her help, she was able to qualifies for the Olympics and get to where she is now, which it shows everyone with Epilepsy and any other condition that if they really put their mind to something and they really want to do something, then they don't have to let let it stop. Let stop them.
Yep. It's so it's great to see. And it's amazing that you got to interview her. Yeah. Absolutely. We all have. We all have our role models. I think for four, it's important. I know a little bit more about epilepsy than most people just because my favorite author had Epilepsy is the Russian author Dusky. And so he talked and wrote a lot about what that experience was like for him, even though, and he was living in mid 800. So they knew much less than we know today. But it's interesting to see, like the science, has the research progress or are people just saying like, well, it's something that you have to live with and we're going to manage it and that's kind of where we are with it.
Or have there been do you see any breakthroughs coming soon? I guess this question is for both of you with Epilepsy and how to better manage it and understand it.
So there's always breakthroughs happening. I think understanding has got a lot better. The Sciences has improved and is continuing to improve in a big part of young epilepsies work is not only these great services and support and information for young people, but we've also got health and research as well as a learning arm. So there's lots of different facets to young epilepsy and the health and research side is really important, and especially the research. We can constantly working with UCL and Great Ormonty Hospital, for example, to continually understand more and make more breakthroughs about exactly what's going on and how we can improve diagnoses.
And there's lots of exciting things on the horizon. And I'd encourage anyone interested as well to take a look on our website. You Eclipse UK and take a look at the research and our research reports. And if you are interested in the science, but definitely it's a tough one because young people have to and adults, you have to accept epilepsy. That is not necessarily going to be a complete cure. Eventually, we're hoping that we may get to that point, but it's a real acceptance of this is something that is part of you, and it's something that you will hopefully be able to manage.
And obviously, with our list, she's managed to get to a point where she has been seizure free, and hopefully that continues. And that's with a mixture of medication, the right lifestyle often ketogenic diets support with people with epilepsy. And of course, what Alice Alice was mentioning around healthy diet and not too much alcohol, sleep and stress have a massive impact as well. But also we're hoping we'll get to a stage where you can just find a cure. But I don't think that's around the corner, but we're always always trying to push for that.
So four people is it's a real acceptance, but then also about understanding that it doesn't have to define you so often? That is our message to all of our young people, that SFC doesn't have to define you, and you can get it to a place where it actually supports you and move you into places and allows you to meet people that you never would have that before. And actually, you know, like in the case with birth Dobbin she wanted to compete professionally and the sport that she loves, and she's managed to get there.
And I think young people find stories like that so powerful and inspiring because it's hard day to day to really take away those limiting beliefs, to really understand that what you want, you can achieve. You just may need to find a slightly longer way to get there or need more support than a typical other person that you might know at school or College. But but the world is still your oyster, and we still really encourage everybody to go after their dreams. And we've got a campaign at the moment, actually a mental health campaign which is called On Top of Epilepsy and where our message really is around on the kind of challenges with Epilepsy.
And not only do you have your epilepsy, but on top of that, you have the DayToday challenges with the mental health challenges typically and all other things to have to think about the always at the back of your mind. But also our clear message with this campaign is that people can feel like they are getting on top of it. It's not going to go away completely, but you can feel that you've kind of climbed on top of it and you feel much more. There's lots of coping mechanisms and support mechanisms in place, lots of different avenues to try and go down health wise, medical wise.
There's always research continuing and it's possible to get to a place where you feel on top of your epilepsy and you can kind of go and reach for your dreams. Really? So yeah, I'd encourage everybody to get on board on top of the CPC campaign as well, because it's really pushing the message to inspire young people, but also to advise of what the real challenges are and how young people with their perhaps who are probably suffering from mental health challenges as well. They need that support and in clinical pathways, it's not prioritized, and we really need to push for that so that they're getting the support that they need.
I mean, I'm glad you said all that is helps me understand better. I see, you know, having just met Alice, I see.
I.
See you having a huge advantage over a lot of your here's, a University who are going out drinking all day or all night and thinking, you know, like I was there when I went to College. I didn't do that. But, you know, I probably had more fun than I should have, but the reality is you're more focused, you're understanding yourself better and you are striving towards something that is going to give you a really deep fulfillment. You know, as a person, as a citizen, as somebody who's able to already at 22, started thinking about giving back and helping other people.
I mean, those are amazing attributes to have as a person.
Thank you. Yeah. I just wanted to add as well to what he was saying about definitely acceptance. I think it is so important. Yeah. It's been the biggest thing that I've noticed and to get to a point where I feel like I can try to help other people, as you were saying, unlike have a rewarding life in the future. I think that's definitely come from being able to get on track with accepting the diagnosis.
I.
Mean, you've come very, very far. It seems like just knowing you for 50 minutes in three years. It's pretty incredible to have your life flip upside down and you're still pushing through and, you know, learning, growing, contributing. I mean, like, I agree with what Helena said that, you know, the world is your oyster. You just have to I just have to explore and stay curious and keep keep accepting because whether you have a disability or not, how many people never accept themselves, how many people never reflect on those things about who they are and who they want to be in the world?
And it's such a it makes me sad because I think that we're here to fulfill potential. We have so much potential as human beings that so many of us don't fulfill for various reasons. And you are already at 22. You're a light for other people, you know, and hopefully you're going to continue down that road. So my last question for you both is, what have I missed in this conversation that you feel is important to talk about.
Something that I guess I just want to is how how important it is, especially for anyone listening or anyone that can empathize with having a disability or with having epilepsy. It looks so different from individual to individual. And I think it's so important to really look at where you are now and not be afraid to kind of reach out and look around and see where you can get support in order to move the steps, the right steps, that it is for you, and just keep doing that for somebody listening.
Alice might seem light years away from where they are now. I think Alice coming into young Alex should have seen that some of the young reps are the young people. They're having multiple seizures a day. They still haven't found medication that works, and it's hard. It's really, really hard. But other people are even much further along from Alice, and their epilepsy doesn't actually really affect them too much. And it's more of a kind of historical thing, but they kind of can live quite normal lives, and that may manifest differently for whatever disability you have.
And I think it's so important to look for the support that is there. We offer loads of support young epilepsy, but I'm sure over in the US as well, there's charities that offer similar support and use that inspiration of other people's stories to help you in your own personal journey, and that will look so different from everybody else's. But just believe that every little step along the way is a positive one. And even if it doesn't feel like you're really getting somewhere very fast, like we've talked about in this conversation, you're learning so much about yourself, you're learning about what's important to you, your networking with people that you probably would never have met before in medical world, or if you're involved with events or charities or locally.
And that's far more than a lot of people who don't seem to have any issues do themselves. And that's a real gift that you can then share with the world. Yeah. I think I just wanted to emphasize that, especially epilepsy, it can look so different, and especially when you're younger, you're still just figuring out your life and who you are and where you should be going and what you should be doing. But as long as you're moving forward and getting the support that is out there and connecting with others, that's really powerful.
I really recommend just connecting with others, and you can do that through our charity on the Channel and the hub applying it to be a young rep. We've also got a big group of young supporters as well, who are a larger group of young people with USPS as well and just really support each other in moving forward. And what you have to offer. The world is still so valuable, and it might not be that you are an Olympic athlete like be sobbing. But that's not your story.
You've got your own unique story, so just really own that and run with that.
That's really, really well said. Thank you for that. Helena. Alice, do you have anything to add?
Yeah. I just like to add that when you get a diagnosis of the I'm sure any other disability or condition illness when you're getting that diagnosis. Obviously, the main focus at that point is your physical health, and I think a lot of people can then neglect how it's going to affect them mentally. And I think that that is just as important as getting the diagnosis where you're so focused on your physical health is easy to neglect how it's going to impact you mentally. And that's something that I definitely found was just as important, if not more important than the diagnosis itself, because if you don't take the time to adapt your life to the changes that the diagnosis is going to bring, then it makes it so much more difficult to deal with.
Yeah. I think it's so important to try and find other people in similar situations or reach out to someone to speak to so that you don't feel alone in what you're going through. And I think that can win that. It just helps so much to to meet other people who are going through a similar thing to that honestly made such a difference to me. And I feel really lucky to have been able to do that. I just say it's so important not to neglect the challenges that you're likely to face mentally when going through the diagnosis of a health condition.
Absolutely. Thank you for that. Last but not least. So where can people touch base, reach out connect? I think you said it before, but we'll just let's let's say one more time at the end here. So how can people find you? How can people connect with you?
So for Young Epilepsy go to our website. We've got a website, Young Epilepsy or UK. We also have the channel, which is the channel or or UK. And that is the digital platform dedicated for young people, children, young people with Epilepsy. So that's the place to check out. But if you're looking for more information, research or to donate, then I gone to the Young Epilepsy website as well. And then we are also on all social media at Young Epilepsy. And then I think Alice has got some of her own personal and which wanted to share as well.
Yeah. So I just wanted to share my personal Instagram. I sometimes post Epilepsy related content and sometimes post things that I've done with Young Epilepsy. And I'm also open to any messages of if I can help anyone else who's dealing with Epilepsy, I would be happy to. So my Instagram is two underscores and then Alice Barry, fantastic.
Thank you. Thank you both so much for the time and for the thoughtfulness and for sharing your experiences. And I'm just. I'm really happy that we connected, that we took the time to do this. And I hope that we can do it again soon.
Sam, thank you so much for your time. It was a real pleasure.
Thank you very much. It's a real.
Helpful links:
Young Epilepsy: www.youngepilepsy.org.uk
Facebook: www.facebook.com/YoungEpilepsy
Twitter: www.twitter.com/youngepilepsy
Instagram: www.instagram.com/youngepilepsy/